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1.
  • Milberg, Anna, et al. (författare)
  • "A rewarding conclusion of the relationship" : staff members' perspectives on providing bereavement follow-up
  • 2011
  • Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 19:1, s. 37-48
  • Tidskriftsartikel (refereegranskat)abstract
    • GOALS OF WORK: Staff members in palliative home care play an important role in supporting bereaved family members. The aim of this study was to explore staff members' perspectives on providing such support. MATERIAL AND METHODS: Staff members in six units responded (n = 120; response rate 58%) to a postal questionnaire with Likert-type and open-ended questions. The responses were analyzed using statistics and manifest content analysis. MAIN RESULTS: None of the respondents stated that bereavement follow-up was "most often difficult," 23% "most often rather difficult," 52.5% "most often rather easy," and 12.5% "most often easy." Apart from a tendency for age to be linked to perceived difficulty, there were no apparent patterns. Bereavement follow-up was a positive opportunity to support the family member's coping with their bereavement and to get feedback on the palliative care provided. Critical aspects concerned the question of whose needs actually were being met at bereavement follow-up, i.e., the staff members' needs for getting feedback on the care provided versus the risk of burdening the family members' by reminding them of the deceased's dying trajectory. Aspects that negatively influenced the staff members' experiences were complex and related, e.g., to the family member's dissatisfaction with the care provided, to the staff member's perceived lack of competence, and to the staff member's relationship to the family member. CONCLUSIONS: Bereavement follow-up was perceived as a rewarding conclusion to the relationship with the family member. The findings suggest that meaning-based coping might be an appropriate framework when understanding staff members' experiences with providing bereavement follow-up.
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3.
  • Milberg, Anna, et al. (författare)
  • Patients Sense of Security During Palliative Care-What Are the Influencing Factors?
  • 2014
  • Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 48:1, s. 45-55
  • Tidskriftsartikel (refereegranskat)abstract
    • CONTEXT:Having a sense of security is vitally important to patients who have a limited life expectancy.OBJECTIVES:We sought to identify the factors associated with patients' sense of security during the palliative care period.METHODS:We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link).RESULTS:Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model.CONCLUSION:These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.
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4.
  • Milberg, Anna, et al. (författare)
  • What is a “secure base” when death is approaching? A study applying attachment theory to adult patients’ and family members’ experiences of palliative home care
  • 2012
  • Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 21:8, s. 886-895
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectiveAttachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a ‘secure base’ (a central concept within the theory).MethodsTwelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis.ResultsInformants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person.ConclusionsImportant aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.
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6.
  • Friedrichsen, Maria, et al. (författare)
  • Breaking bad news in the transition from curative to palliative cancer care : patient's view of the doctor giving the information.
  • 2000
  • Ingår i: Supportive Care in Cancer. - 0941-4355 .- 1433-7339. ; 8:6, s. 472-478
  • Tidskriftsartikel (refereegranskat)abstract
    • In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Sire subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.
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7.
  • Friedrichsen, Maria, et al. (författare)
  • Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
  • 2002
  • Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 16:4, s. 323-330
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Cancer patients' interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received. METHODS: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach. RESULTS: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death. CONCLUSION: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.
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8.
  • Friedrichsen, Maria, et al. (författare)
  • Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
  • 2000
  • Ingår i: Acta Oncologica. - : Informa UK Limited. - 0001-6381 .- 0284-186X .- 1651-226X. ; 39:8, s. 919-925
  • Tidskriftsartikel (refereegranskat)abstract
    • The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients' own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients' previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.
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9.
  • Friedrichsen, Maria, et al. (författare)
  • Cancer patients' perceptions of their participation and own resources after receiving information about discontinuation of active tumour treatment.
  • 2000
  • Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 39:8, s. 919-925
  • Tidskriftsartikel (refereegranskat)abstract
    • The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients’ own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients’ previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.
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10.
  • Friedrichsen, Maria, et al. (författare)
  • Cultures that collide : An ethnographic study of the introduction of a palliative care consultation team on acute wards
  • 2021
  • Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards.PURPOSE: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures.METHODS: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography.RESULTS: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care.CONCLUSION: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort.
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11.
  • Friedrichsen, Maria, et al. (författare)
  • Does a Half-Day Course about Palliative Care Matter? A Quantitative and Qualitative Evaluation among Health Care Practitioners
  • 2013
  • Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 16:5, s. 496-501
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals. less thanbrgreater than less thanbrgreater thanObjectives: The aims of this study were to quantitatively and qualitatively explore professionals experience of the usefulness and importance of such a course. less thanbrgreater than less thanbrgreater thanDesign: An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times. less thanbrgreater than less thanbrgreater thanSetting and Subjects: Data was collected in Sweden through structured and open-ended questions (n = 355) and in focus group discussions (n = 40). less thanbrgreater than less thanbrgreater thanResults: The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered. less thanbrgreater than less thanbrgreater thanConclusion: The course was appreciated and useful in the professionals work, but it also created problems.
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12.
  • Friedrichsen, Maria, et al. (författare)
  • Palliative care consultation team on acute wards-an intervention study with pre-post comparisons
  • 2017
  • Ingår i: Supportive Care in Cancer. - : SPRINGER. - 0941-4355 .- 1433-7339. ; 25:2, s. 371-380
  • Tidskriftsartikel (refereegranskat)abstract
    • There is little evidence regarding primary healthcare team members perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. This study aimed to study whether a PCCT can influence and change primary healthcare team members perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 years intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.
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13.
  • Friedrichsen, Maria, 1966-, et al. (författare)
  • Prolonged grievers : A qualitative evaluation of a support group intervention
  • 2014
  • Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 12:4, s. 299-308
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.Methods: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.Results: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.Significance of results: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.
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14.
  • Friedrichsen, Maria, et al. (författare)
  • Receiving bad news : experiences of family members.
  • 2001
  • Ingår i: Journal of Palliative Care. - Montreal, Canada : SAGE Publications. - 0825-8597 .- 2369-5293. ; 17:4, s. 241-247
  • Tidskriftsartikel (refereegranskat)abstract
    • Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context. Methods: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method. Results: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role. Conclusion: This study has revealed possible explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.
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15.
  • Olsson, Louise (författare)
  • Hopp hos döende patienter med cancer i palliativ hemsjukvård
  • 2011
  • Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Hope is meaningful and very important for people – even for people at the last days of their lives. Health professionals can sometimes describe hope in terms of hope for a cure, which may lead to feelings of hopelessness or empty hope for a patient with an incurable disease. In research, there is very little written about hope in the palliative home care context, even more so from the patient’s perspective. The aim of this project was to study how hope changes over time in cancer patients at the palliative phase, and to study the strategies used to cope with these changes. This was studied from the patients’ own perspective and in a home care context, but with the ambition of developing the results into a model or theory.Grounded Theory was the chosen research approach. Two sets of tape-recorded interviews were made with 11 patients in specialized palliative home care – a total of 20 interviews. The patients were also asked to write diaries about changes in their everyday feelings of hope within a 4-week period. Measurements of hope (HHI-S) and symptoms (ESAS) were also made at three occasions. Constant comparison of data was made during the analysis.The results showed that patients’ hope changed over time. Hope was described as a process involving a glimmering core of hope untouched by external circumstances (Study I). Hope was described in different processes, creation of a convinced hope, creation of simulated hope, collection and maintaining moments of hope and gradually extinct hope. The dying patient’s hope can be described as a gradual and successive adaptation process. Strategies for maintaining life were expressed to preserve the meaning in life, to communicate with others about life and death, to involve "fellow travelers" and to change focus. The strategy of preparing for death involved; taking responsibility for the future and seeing possibilities of living on even after death (Study II). The strategies were parallel to, and dependent on each other. It is important that health professionals understand the patient’s own strategies for maintaining life/hope, as well as the patient’s own preparations for death, so that hope is never taken away despite preparations at the end of life.In summary, hope can be interpreted as a changing process over time – a process that can change quickly, but is based on an inviolable core that is not easily moved by external circumstances. It is important that the health care personnel realize that patients simultaneously prepare for their deaths even as they try to maintain hope. Deeper understanding of what hope can mean for a patient can decrease the risk of hope being taken away during one’s final days.
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16.
  • Yngman-Uhlin, Pia, et al. (författare)
  • Circling around in tiredness : perspectives of patients on peritoneal dialysis
  • 2010
  • Ingår i: Nephrology Nursing Journal. - : Journal of the American Nephrology Nurses' Association. - 1526-744X .- 2163-5390. ; 37:4, s. 407-413
  • Tidskriftsartikel (refereegranskat)abstract
    • The experience of tiredness linked to poor sleep in patients on peritoneal dialysis was explored using the qualitative method phenomenology. Eight women and six men in southeast Sweden were interviewed. The patients' descriptions were characterized by a circular structure "circling around in tiredness." This study illustrates the problems of tiredness and illuminates the need for healthcare professionals to assess the impact of tiredness and highlight the need for strategies to improve the patient's situation.
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17.
  • Christina, Snöbohm, et al. (författare)
  • Experiencing one's body after a diagnosis of cancer-a phenomenological study of young adults.
  • 2010
  • Ingår i: Psycho-Oncology. - : John Wiley & Sons, Ltd. - 1057-9249 .- 1099-1611. ; 19:8, s. 863-869
  • Tidskriftsartikel (refereegranskat)abstract
    • Young adults with cancer are still in the process of shaping their lives and are therefore at a vulnerable stage. Altered body image may change how patients cope with the disease and impact rehabilitation capacity.Objective: To describe the essence of how young adults with cancer experience their bodies.Methods: Interviews (12 informants), transcribed verbatim. Analysis: Giorgi's phenomenological method.Results: Identified themes: experience of 'physical body change', 'discomfort', 'the body at the moment without reflecting on the disease and treatment', 'body image' and 'grasping the illness'. Essences: The body as the bearer of life; conflict between age and disease; manifest changes in appearance, physically and mentally; the body no longer a whole; the body as influenceable and able to recover and heal.Conclusions: These patients undergo physical and mental changes that affect their self-image and health-related life quality. Thus, future studies need to explore interventions that may enhance the individualś perception of their body.
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18.
  • Cronfalk, Berit, et al. (författare)
  • The existential experiences of receiving soft tissue massage in palliative home care-an intervention
  • 2009
  • Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 17:9, s. 1203-1211
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Soft tissue massage is currently used in palliative care for the relief of anxiety and pain. Only few studies have focused on patients' deeper experience of receiving the massage. Aim The purpose of this study was to explore how patients with cancer in palliative home care experienced soft tissue massage. Materials and methods Twenty-two patients received soft tissue massage (hand or foot) nine times over a period of 2 weeks. Each session lasted for 25 min. Following the last massage session, a qualitative interview was conducted. The analysis was performed using a hermeneutic approach. Findings Soft tissue massage generated feelings of existential respite with perceptions of being released from illness for a while. Two categories constituted the basis of the experiences: (1) "an experience of thoughtful attention" and (2) "a sensation of complete tranquility" resulting in the overarching theme "A time of existential respite." Conclusion The patients experienced the massage to give meaning and to be important as it generated feelings of an inner respite. Relevance to clinical practice Soft tissue massage appears to be an appreciated source of support to dying patients in palliative home care. The method is easy to comprehend and relatively short (25 min) which may imply that it is a suitable complement in nursing care for this patient group.
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19.
  • Dahlqvist, Jenny, et al. (författare)
  • Does comprehensive geriatric assessment (CGA) in an outpatient care setting affect the causes of death and the quality of palliative care? A subanalysis of the age-FIT study
  • 2019
  • Ingår i: European Geriatric Medicine. - : Springer Science and Business Media LLC. - 1878-7649 .- 1878-7657. ; 10:3, s. 455-462
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The purposes of this study were to retrospectively study whether comprehensive geriatric assessment (CGA) given to community-dwelling old patients with high health care usage has effects regarding: (1) the cause of death and (2) the quality of the provided palliative care when compared to patients without CGA-based care. Method: This study includes secondary data from a randomised controlled trial (RCT) with 382 participants that took place in the periods 2011–2013. The present study examines all electronical medical records (EMR) from the deceased patients in the original study regarding cause of death [intervention group (IG) N = 51/control group (CG) N = 66] and quality of palliative care (IG N = 33/CG N = 41). Descriptive and comparative statistics were produced and the significance level was set at p < 0.05. Results: The causes of death in both groups were dominated by cardiovascular and cerebrovascular diseases with no statistical difference between the groups. Patients in the intervention group had a higher degree of support from specialised palliative care teams than had the control group (p = 0.01). Conclusion: The present study in an outpatient context cannot prove any effects of CGA on causes of death. The study shows that CGA in outpatient care means a higher rate of specialised palliative care, but the study cannot show any effects on the palliative quality parameters measured. Further studies with statistical power are needed.
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20.
  • Drewes, A. M., et al. (författare)
  • Definition, diagnosis and treatment strategies for opioid-induced bowel dysfunction-Recommendations of the Nordic Working Group
  • 2016
  • Ingår i: Scandinavian Journal of Pain. - : Walter de Gruyter GmbH. - 1877-8860 .- 1877-8879. ; 11, s. 111-122
  • Tidskriftsartikel (refereegranskat)abstract
    • Background and aims: Opioid-induced bowel dysfunction (OIBD) is an increasing problem due to the common use of opioids for pain worldwide. It manifests with different symptoms, such as dry mouth, gastro-oesophageal reflux, vomiting, bloating, abdominal pain, anorexia, hard stools, constipation and incomplete evacuation. Opioid-induced constipation (OIC) is one of its many symptoms and probably the most prevalent. The current review describes the pathophysiology, clinical implications and treatment of OIBD. Methods: The Nordic Working Group was formed to provide input for Scandinavian specialists in multiple, relevant areas. Seven main topics with associated statements were defined. The working plan provided a structured format for systematic reviews and included instructions on how to evaluate the level of evidence according to the GRADE guidelines. The quality of evidence supporting the different statements was rated as high, moderate or low. At a second meeting, the group discussed and voted on each section with recommendations (weak and strong) for the statements. Results: The literature review supported the fact that opioid receptors are expressed throughout the gastrointestinal tract. When blocked by exogenous opioids, there are changes in motility, secretion and absorption of fluids, and sphincter function that are reflected in clinical symptoms. The group supported a recent consensus statement for OIC, which takes into account the change in bowel habits for at least one week rather than focusing on the frequency of bowel movements. Many patients with pain receive opioid therapy and concomitant constipation is associated with increased morbidity and utilization of healthcare resources. Opioid treatment for acute postoperative pain will prolong the postoperative ileus and should also be considered in this context. There are no available tools to assess OIBD, but many rating scales have been developed to assess constipation, and a few specifically address OIC. A clinical treatment strategy for OIBD/OIC was proposed and presented in a flowchart. First-line treatment of OIC is conventional laxatives, lifestyle changes, tapering the opioid dosage and alternative analgesics. Whilst opioid rotation may also improve symptoms, these remain unalleviated in a substantial proportion of patients. Should conventional treatment fail, mechanism-based treatment with opioid antagonists should be considered, and they show advantages over laxatives. It should not be overlooked that many reasons for constipation other than OIBD exist, which should be taken into consideration in the individual patient. Conclusion and implications: It is the belief of this Nordic Working Group that increased awareness of adverse effects and OIBD, particularly OIC, will lead to better pain treatment in patients on opioid therapy. Subsequently, optimised therapy will improve quality of life and, from a socio-economic perspective, may also reduce costs associated with hospitalisation, sick leave and early retirement in these patients.
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21.
  • Ekdahl, Anne, et al. (författare)
  • They do what they think is the best for me : Frail elderly patients' preferences for participation in their care during hospitalization.
  • 2010
  • Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 80:2, s. 233-240
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: To deepen the knowledge of frail elderly patients' preferences for participation in medical decision making during hospitalization. METHODS: Qualitative study using content analysis of semi-structured interviews. RESULTS: Patient participation to frail elderly means information, not the wish to take part in decisions about their medical treatments. They view the hospital care system as an institution of power with which they cannot argue. Participation is complicated by barriers such as the numerous persons involved in their care who do not know them and their preferences, differing treatment strategies among doctors, fast patient turnover in hospitals, stressed personnel and linguistic problems due to doctors not always speaking the patient's own language. CONCLUSION: The results of the study show that, to frail elderly patients, participation in medical decision making is primarily a question of good communication and information, not participation in decisions about medical treatments. PRACTICE IMPLICATIONS: More time should be given to thorough information and as few people as possible should be involved in the care of frail elderly. Linguistic problems should be identified to make it possible to take the necessary precautions to prevent negative impact on patient participation.
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22.
  • Ekdahl, Anne W, et al. (författare)
  • Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised? : A cross-sectional survey
  • 2011
  • Ingår i: BMC Geriatrics. - London, UK : BioMed Central Ltd.. - 1471-2318. ; 11:46
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Medical decision making has long been in focus, but little is known of the preferences and conditions for elderly people with co-morbidities to participate in medical decision making. The main objective of the present study was to investigate the preferred and the actual degree of control, i.e. the role elderly people with co-morbidities wish to assume and actually had with regard to information and participation in medical decision making during their last stay in hospital.This study was a cross-sectional survey including three Swedish hospitals with acute admittance. The participants were patients aged 75 years and above with three or more diagnoses according to the International Classification of Diseases (ICD-10) and three or more hospitalisations during the last year. METHODS: We used a questionnaire combined with a telephone interview, using the Control Preference Scale to measure each participant's preferred and actual role in medical decision making during their last stay in hospital. Additional questions were asked about barriers to participation in decision making and preferred information seeking role. The results are presented with descriptive statistics with kappa weights. RESULTS: Of the 297 elderly patients identified, 52.5% responded (n = 156, 46.5% male). Mean age was 83.1 years. Of the respondents, 42 of 153 patients said that they were not asked for their opinion (i.e. no shared decision making). Among the other 111 patients, 49 had their exact preferred level of participation, 37 had less participation than they would have preferred, and 23 had more responsibility than they would have preferred. Kappa statistics showed a moderate agreement between preferred and actual role (κw = 0.57; 95% CI: 0.45-0.69). Most patients wanted to be given more information without having to ask. There was no correlation between age, gender, or education and preferred role. 35% of the patients agreed that they experienced some of the various barriers to decision making that they were asked about: 1) the severity of their illness, 2) doctors with different treatment strategies, 3) difficulty understanding the medical information, and 4) difficulty understanding doctors who did not speak the patient's own language. CONCLUSIONS: Physicians are not fully responsive to patient preferences regarding either the degree of communication or the patient's participation in decision making. Barriers to participation can be a problem, and should be taken into account more often when dealing with hospitalised elderly people.
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23.
  • Erichsén, Eva, 1959-, et al. (författare)
  • A phenomenological study of nurse´s understanding of honesty in palliative care
  • 2010
  • Ingår i: Nursing Ethics. - UK : sagepublications. - 0969-7330 .- 1477-0989. ; 17:1, s. 39-50
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
    • Honesty is essential for the care of seriously ill and dying patients. The current study aimed to describe how nurses experience honesty in their work with patients receiving palliative care at home. The interviews in this phenomenological study were conducted with 16 nurses working with children and adults in palliative home-based care. Three categories emerged from analyses of the interviews: the meaning of honesty, the reason for being honest and, finally, moral conflict when dealing with honesty. The essence of these descriptions was that honesty is seen as a virtue, a good quality that a nurse should have. The nurses’ ethical standpoint was shown in the moral character they show in their work and in their intention to do good. This study could help nurses to identify different ways of looking at honesty to promote more consciousness and openness in ethical discussions between colleagues and other staff members.
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24.
  • Erichsén, Eva, 1959- (författare)
  • Constipation in palliative care : Prevalence, definitions, symptom distress and risk-factors
  • 2015
  • Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Background and aims: Constipation for patients in palliative care is common and described with variations in prevalence. Side -effects from opioid- treatment, is considered to be one of the main factors leading to constipation. The overall aim of the thesis was to study constipation among patients admitted to specialized palliative care- settings in Sweden. The specific aims of the thesis were 1) To describe and explore the prevalence, definition and symptom distress of constipation by applying different definitions of constipation, in patients admitted to specialized palliative care settings in Sweden. 2) To identify factors related to constipation in patients in specialized palliative care and comparing these factors for patients with different types of constipation to patients without constipation.Methods: A literature- search were conducted where prevalence of- and factors related to constipation was explored and included in a questionnaire, developed for this thesis. Data was collected in a cross- sectional design with a response rate of 50% and analysed with logistic regression.Results: A total of 485 patients from 38 specialized palliative care- units in Sweden participated. Prevalence of constipation for patients in specialized palliative care varied between 7- 43 % depending on definition used. Two different constipation- groups were identified: Medical constipation- group 23% (MCG) and Perceived constipation- group 35% (PCG). Three sub- groups was also identified: patients with i) only ≤ 3 defecations/week, 7%, ii) only perception of being constipated, 19%, and iii) patients with both ≤ 3 defecations/ week and perception of being constipated,16%. Several factors were found to be related to constipation as hospitalisation, absence of laxative- treatment, haemorrhoids, poor appetite, hard stool form and opioids.Conclusions: Prevalence of constipation may differ depending on definitions used. Distress from constipation and other factors related to constipation, than opioids, needs to be incorporated into the clinical constipation- assessment. Validated constipation assessment tool needs to be developed.
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25.
  • Erichsén, Eva, 1959-, et al. (författare)
  • Constipation in specialized palliative care : factors related to constipation when applying different definitions
  • 2016
  • Ingår i: Supportive Care in Cancer. - : Springer Berlin/Heidelberg. - 0941-4355 .- 1433-7339. ; 24:2, s. 691-698
  • Tidskriftsartikel (refereegranskat)abstract
    • CONTEXT:For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied.OBJECTIVES:The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation.METHODS:Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios.RESULTS:Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease.CONCLUSION:There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.
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26.
  • Erichsén, Eva, et al. (författare)
  • Constipation in specialized palliative care : prevalence, definition and patient perceived symptom distress
  • 2015
  • Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 18:7, s. 585-592
  • Tidskriftsartikel (refereegranskat)abstract
    • Context: The prevalence of constipation among patients in palliative care has varied in prior research, from 18-90 %, depending on different study factors.Objectives: The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings.Methods: Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR).Result: The prevalence of constipation varied between 7 – 43 %, depending on the definition used. Two constipation- groups were found: (i) Medical constipation- group (MCG; ≤ 3 defecations/week n=114; 23%); (ii) Perceived constipation- group (PCG; Patients with a perception of being constipated the last two weeks; n= 171; 35%). Three sub-groups emerged: patients with (a) only medical constipation (7 %), (b) only perceived constipation (19 %), and (c) with both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.Conclusion: The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three sub-groups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients’ definition has to be further explored and assessed.
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27.
  • Eriksson, Helene, 1965-, et al. (författare)
  • End of Life Care for Patients Dying of Stroke : A Comparative Registry Study of Stroke and Cancer
  • 2016
  • Ingår i: PLOS ONE. - : PUBLIC LIBRARY SCIENCE. - 1932-6203. ; 11:2, s. e0147694-
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundAlthough stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.ObjectiveTo study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.DesignThis study is a retrospective, comparative registry study.MethodsA retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.ResultsCompared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.ConclusionsThe results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.
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28.
  • Eriksson, Heléne, 1964- (författare)
  • End of Life Stroke Care : perspectives of health-care professionals and family members
  • 2019
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • IntroductionEven though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members’ perspective.AimThe overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods.Design and MethodsThis thesis is based upon four papers employing qualitative, quantitative and mixed-method designs.Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies.Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR.Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units.Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses.ResultsFactors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient’s suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit’s aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient’s altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting’s aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were “seeking trust in chaos”, “seeking clarity when deciding about living or dying” and finally they were “seeking trust in care as a final act of love”.Conclusions:The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs’ attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.
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29.
  • Eriksson, Helene, et al. (författare)
  • Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden
  • 2014
  • Ingår i: Journal of Neuroscience Nursing. - : Lippincott, Williams andamp; Wilkins. - 0888-0395 .- 1945-2810. ; 46:3, s. 162-170
  • Tidskriftsartikel (refereegranskat)abstract
    • In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on nondecisions about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had problems holding to the decision. The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was communication barriers, a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.
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30.
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31.
  • Friedrichsen, Maria, 1966-, et al. (författare)
  • Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care — A qualitative study
  • 2023
  • Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 79:11, s. 4292-4303
  • Tidskriftsartikel (refereegranskat)abstract
    • AimsTo describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.
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32.
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33.
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34.
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35.
  • Friedrichsen, Maria, 1966-, et al. (författare)
  • Concerns about losing control when breaking bad news to terminally ill patients with cancer : Physicians' perspective
  • 2006
  • Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 9:3, s. 673-682
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To study and explore problems perceived by physicians when breaking bad news to advanced cancer patients about discontinuing or not offering tumor-specific treatment due to incurable cancer. Design: A qualitative phenomenographic interview study. Setting: The county of Östergötland in Sweden. Participants: Thirty physicians with different demographic characteristics. Results: According to the physicians' answers breaking bad news was perceived as involving a risk of losing control in different ways, regarding emotions, oneself, confidence, professionalism and patient trust. Four different main categories described as problems were identified, perceptions focusing on existential thoughts, relationships, knowledge, and perceptions related to time and environmental disturbances. Conclusion: Physicians perceived that breaking bad news to dying patients with cancer involved a risk of losing control. Existential thoughts and a lack of knowledge contribute to this risk. Theoretical education in existentiality/spirituality and clinical practice in a palliative context may help maintaining control. © Mary Ann Liebert, Inc.
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36.
  • Friedrichsen, Maria, 1966- (författare)
  • Crossing the border : Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
  • 2002
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Information in the transition to the late palliative phase is not a well-studied area, especially not from the perspective of patients and family members. The aim of this thesis was to describe how cancer patients, family members and physicians experience information during the transition from a curative or early palliative phase to a late palliative phase, i.e. when tumour-specific treatment could not be offered. Cancer patients (n=30) admitted to palliative hospital based home care, family members (n=20) of cancer patients, and physicians (n=30) working with cancer patients in different settings were included in order to create a maximum variation sampling.Tape-recorded, semi-structured interviews and qualitative, phenomenographic analyses were done in all the studies.Patients described the physician as an expert (study I), an important person during this event, despite characterising him/her in different ways ranging from the empathetic professional to the rough and ready expert. Their relationship with the physician was also stressed. Their own resources, i.e. a sense of well being, a sense of security and individual strength, and their previous knowledge, were important components regarding their ability to take part in the communication (study II). Patients interpret words and phrases carefully and can perceive them as forewarnings, as being emotionally trying, and as fortifying and strengthening (study III). The overall message could be interpreted as either focused on quality if life, on treatment or on death and threat.Family members wanted to protect the patient during this period and could be very active and prominent in their protective role (study IV). However, other family members described themselves as being in the background more or less involuntarily. Family members also felt that there were expectations regarding their behaviour, either that they should take over in terms of communication, or that they should restrict their participation. When giving information, the physicians had a clear goal - to make the patient understand while being as considerate toward the patient as possible. However, the strategies for reaching this goal differed and included: explaining and convincing, softening the impact and vaguely suggesting, preparing and adapting. Some physicians had a main strategy while others mixed different strategies depending on the context.The experience of receiving and providing information about discontinuing tumour specific treatment is like crossing a border, where patients experience the behaviour of the physician and the words they express of great significance. Family members assume the role of protectors. Physicians use different strategies in order to help patients cross the border.
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37.
  • Friedrichsen, Maria, et al. (författare)
  • Doctors' strategies when breaking bad news to terminally ill cancer patients
  • 2003
  • Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 6:4, s. 565-574
  • Tidskriftsartikel (refereegranskat)abstract
    • Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient's level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient's reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors' goal was to make patients understand, but the strategies differed depending on the context.
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38.
  • Friedrichsen, Maria, et al. (författare)
  • Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians
  • 2023
  • Ingår i: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24:1
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundThirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area.AimThe aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients.MethodsA qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.ResultsWhen presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering.ConclusionsAll physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.
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39.
  • Friedrichsen, Maria, 1966-, et al. (författare)
  • Experiences of truth disclosure in terminally ill cancer patients in palliative home care
  • 2011
  • Ingår i: Palliative & Supportive Care. - New York : Cambridge university press. - 1478-9515 .- 1478-9523. ; 9:2, s. 173-180
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses. Method: We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically. Results: Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances. Significance of results: Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.
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40.
  • Friedrichsen, Maria, 1966- (författare)
  • Justification for information and knowledge : Perceptions of family members in palliative home care in Sweden.
  • 2003
  • Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 1:3, s. 239-245
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: Several studies have concluded that family members in palliative home care want information about the patient's disease. The aim of this study was to describe family members' perceptions of their motivation for receiving information about the patient's disease. METHOD: Semistructured tape-recorded interviews were performed with 20 family members of patients with incurable progressive cancer who were admitted to hospital-based home care in Sweden. Data were analyzed using a qualitative phenomenographic method. RESULTS: Family members justified their informational needs by emphasizing that they needed to understand and confirm what would happen when the disease progressed, to be mentally prepared for the future, to organize their daily life, to be a source of information to others, and that receiving information was a natural right. SIGNIFICANCE OF RESULTS: This study has revealed some explanations as to why family members want information. In clinical practice, it is important that palliative care team members are aware of family members' level of knowledge and their need for information, as this mental preparation is important.
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41.
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42.
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43.
  • Friedrichsen, Maria, 1966- (författare)
  • Språkets och samtalets betydelse
  • 2013. - 1
  • Ingår i: Palliativ vård. - Lund : Studentlitteratur. - 9789144070964 ; , s. 431-439
  • Bokkapitel (populärvet., debatt m.m.)
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44.
  • Friedrichsen, Maria, 1966-, et al. (författare)
  • The lived experience of constipation in cancer patients in palliative hospital-based home care.
  • 2004
  • Ingår i: International Journal of Palliative Nursing. - 1357-6321 .- 2052-286X. ; 10:7, s. 321-325
  • Tidskriftsartikel (refereegranskat)abstract
    • Constipation is a common and well-studied symptom in palliative care. Most previous studies have focused on the frequency and management of constipation. The current study aimed to investigate the lived experience of constipation among cancer patients in palliative hospital-based home care. Eleven cancer patients admitted to a hospital-based home care unit in Sweden who had experienced constipation participated in this study. Semi-structured interviews were conducted and a qualitative, phenomenological approach was used. Three themes emerged: bodily suffering, mental preoccupation and a reminder of death, and avoidance and social isolation. The experience of constipation was described as an extensive complete person-experience that must be prevented. To prevent unnecessary suffering nurses need to be proactive in the assessment of constipation.
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45.
  • Friedrichsen, Maria, et al. (författare)
  • The responsibility to quench thirst by providing drinks when a relative is dying spouses experience in specialist palliative home care
  • 2023
  • Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 22:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses experience of this, leading to a knowledge gap in this area. Aim The aim of this study was to explore spouses experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. Methods A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results Three main themes emerged regarding spouses experiences of patients thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. Conclusions Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patients fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patients thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.
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46.
  • Friedrichsen, Maria, et al. (författare)
  • Thirst or dry mouth in dying patients? -A qualitative study of palliative care physicians' experiences
  • 2023
  • Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 18:8
  • Tidskriftsartikel (refereegranskat)abstract
    • IntroductionThirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physician's experience, which is why this study is needed. PurposeThis study aimed to explore palliative care physicians' experiences and views of thirst in patients at the end of life. MethodsA qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. ResultsThe analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. ConclusionsThe palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.
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47.
  • Hjelmfors, Lisa, et al. (författare)
  • Communicating prognosis and end-of-life care to heart failure patients : a survey of heart failure nurses' perspectives
  • 2014
  • Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 13:2, s. 152-161
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND:Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.AIMS:This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.METHODS:A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.RESULTS:In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.CONCLUSION:Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.
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48.
  • Hjelmfors, Lisa, et al. (författare)
  • Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List
  • 2022
  • Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:8
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals' perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.
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49.
  • Hjelmfors, Lisa, 1984- (författare)
  • Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
  • 2018
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious.Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals.Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention.Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention.Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals
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50.
  • Hjelmfors, Lisa, et al. (författare)
  • “I was told that I would not die from heart failure” : Patient perceptions of prognosis communication
  • 2018
  • Ingår i: Applied Nursing Research. - : Elsevier. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim and objectives To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.BackgroundProfessionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.MethodsAn inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.Findings Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.Conclusion This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure. 
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